Friday, 20 July 2012

The Big Brother House from Hell

That's where we live right now.  I need to clarify - this is absolutely NO reflection on the care Oscar gets, or the friendships with staff/other families we have forged in hospital.  We've been talking to a new family on our ward, who are trying to adjust to the awful situation they have found themselves in.  When the Dad said one morning "it's just another day in the big brother house from hell" it really struck a chord.  Living in one small room, unable to escape, no privacy, nurses/doctors/other staff walking in and out of our room without notice day and night... It's an intense environment. 

Playing your life out for weeks on end under the constant scrutiny of other people is tough.  That's before you throw in the fact that Oscar is suffering terribly and needing 24/7 care.   I'm suffering from cabin fever pretty badly right now, and it's only been 3 weeks.  And WHO AM I to even think about complaining, when Oscar is going through such absolute hell.  But we long for a Friday night like we used to have - finishing a long week at work, kids in bed for 8pm, Indian take-away and a bottle of wine.  Perfect.

But back to the real world and back to Oscar - the past few days have been very up and down.  Tuesday was a great day, we really thought we had turned that corner good and proper.  Oscar's favourite visitor - the magician - called in, and had our wee man sitting up, doing magic, and giggling!  We LOVE the magician, he's a GREAT guy.  Can't wait to hire him for a party at home!

Making a picture for Daddy
Wednesday morning was also good for Oscar, he was in great form, giving me hugs and talking!  We had a visit from the aquarium which was fantastic, Oscar saw a sea urchin, shark eggs, scallops and a tiny crab.  He was so eager to "fish", he jumped up and was lifting the creatures out of the tank with a small net.  I didn't get any pics as I was struggling to hold him up to get fishing!  However things went downhill Wednesday afternoon, he was very agitated and annoyed, showing a lot of frustration.  We just couldn't settle him at all.  This continued through the night, he barely slept and neither did I.

Thursday was another total nightmare - he happily listened to stories from the "cat lady" who visited our ward, but apart from that Oscar had a terrible day, me too.  He was so aggressive, I was struggling to pin him down for the nurses to administer medication, put up his IV infusions, check his obs - and there is an awful lot of that going on 24 hours/day.   It's difficult to keep calm and be patient, as well as stay upbeat in order to keep Oscar's spirits up, when you are just as frustrated by the whole thing as he is.  But we try our best, aiming to soldier on through it like our little warrior does.  The doctors suggested Oscar's morphine could be to blame for his temper and mood swings, but were reluctant to turn it down as it's obvious he still needs serious pain relief for the condition he is in.  He was being SO demanding, and I have to try to decipher what the various moans and groans mean - if I don't understand or don't act quickly enough then I have to deal with tears and aggressive tantrums... it is very exhausting.

Today has been a fairly good day so far - we managed a decent sleep last night, apart from the 4 hourly checks and in-between medications and IV pump alarms.  The doctors have reduced his background morphine slightly, and Oscar's mood has definitely been better today.  After being grumpy this morning, he ended up out of bed playing in a big bowl of water and washing his toes using syringes.  He loves soaking the nurses, especially squirting them when he thinks they are not looking!  He wanted up to dance with me, which makes me so happy - when he is well we dance to the theme tunes of his favourite tv shows!  He also spent ages playing with Valerie, taking pictures with her phone and searching through it for games - much more like the real Oscar than we have seen in a long time.  He is exhausted now, lying in bed watching tv all afternoon, but it is great to see him lying down because he has tired himself out, rather than simply because he is so ill!


His bloods are also improving slowly, which is a sign that his stem cells are finally at work.  White blood cell count was 0.1 yesterday and 0.3 today - we need these to rise significantly as they are what fight off infection, when they are so low even the "friendly" bacteria in his own gut is a threat to him!  But things are definitely starting to look up, and with every day that passes we are seeing small but positive signs that Oscar is on the road to recovery.  Keep fighting little man - you are amazing, and we're right here with you every step of the way!  Xx

5 comments:

  1. I follow gorgeous Oscar's story, and check in on him every day.I cannot imagine the stress you must all be under and I hope Oscar continues to feel better each day.He is such a brave little boy,
    Much love from Sian x

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  2. you never cease to amaze me with your strength & courage. so glad to hear that Oscar's feeling a little better.

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  3. Like Sian, I also check twitter to see updates on how your lovely wee man doing. So good to see him heading in the right direction. It must be very difficult to watch your child suffering. You are all very brave. Keep fighting Oscar!

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  4. michellebmclaughli23 July 2012 at 21:50

    prayers are all i can give and it seems so little. our whole family is so proud of you all. i think you are all stars. xxx michelle xxxxxxxx

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